The perspectives of older people living with dementia regarding a possible move to a nursing home

Abstract

Background/Objectives

Moving into a nursing home is often an unavoidable life event for older people living with dementia. It is associated with negative emotions and outcomes. Research capturing their perspectives is scarce. This study aims to identify how older people living with dementia perceive a potential life in a nursing home and to understand their (future) care wishes.

Materials and methods

This study is part of the European TRANS-SENIOR research network. The study followed a qualitative phenomenological methodology. Semi-structured interviews with 18 community-dwelling older people living with dementia were conducted between August 2018 and October 2019 (METCZ20180085). A stepwise interpretive phenomenological analysis was performed.

Results

The majority of community-dwelling older people feared the idea of potentially moving to a nursing home. The participants associated a possible move with negative perceptions and emotions. Additionally, this study emphasized the importance of knowledge of current and past experiences with care when identifying the participant’s wishes. They wanted to remain (a) individuals, who are (b) autonomous and have (c) social contacts if they would move to a nursing home.

Discussion/Implications

This study showed how past and current care experiences can educate/inform healthcare professionals on the future care wishes of older people living with dementia. The results indicated that listening to the wishes, and life stories of people living with dementia could be a way of identifying ‘a suitable time’ to suggest a move to a nursing home. This could improve the transitional care process and adjustment to living in a nursing home.

Keywords:

• Dementia
• transition
• long-term care
• care wishes and qualitative research

Background

The transition from home to a nursing home is a common care transition that significantly impacts the lives of older people living with dementia. Although, hospital admission often precedes the move to a nursing home (Harrison et al., 2017). A substantial group of older people move directly from home to a nursing home. Here, a nursing home is defined as a long-term care facility (LTC) providing room and board, as well as management of chronic medical conditions and 24-h assistance with Activities of Daily Living (ADL) in residents who are physically and/or cognitively impaired (Sanford et al., 2015).

Moving to a nursing home is often viewed as a last resort and is associated with negative feelings and emotions for both older people and their family caregivers (Groenvynck et al., 2022; Kerbler, 2012). Statements such as ‘locking people up’ and ‘the place where you die’ are often related to nursing homes (Groenvynck et al., 2022). The study by Oosterveld-Vlug et al. (2013) found that nurses and physicians employed at a nursing home hoped they would never have to move to a nursing home themselves. They associated moving to a nursing home with the loss of dignity and independence.

To counter the prejudices and avoid negative outcomes recent studies aimed to understand how older people can feel more ‘at home’ in a nursing home (Cater et al., 2022; van Hoof et al., 2016). According to the WHO, nursing homes need to create a home-like environment for older people (World Health Organization, 2015). Feeling ‘at home’ in a nursing home is important as it can create independence and personhood. It is also associated with quality of life, being acknowledged, having autonomy, having a relationship with other residents and staff and, having an environment that allows for privacy and personal belongings (Board & McCormack, 2018; Leino et al., 2022; Rijnaard et al., 2016). Feeling ‘at home’ is crucial, especially for older people, as it supports activities of daily living and social contact (e.g. by participating in leisure activities with other residents) (Brownie et al., 2014; Davies et al., 2022; Leino et al., 2022).

Understanding older people’s wishes for future nursing home care is crucial as a recent study by Cater et al. (2022) found that only 31% of nursing home residents felt at home in their nursing homes. A possible explanation for this is that nursing homes may not sufficiently prioritize the needs and wishes of their residents (van Hoof et al., 2016; van Hoof et al., 2015). More specifically, a recent study by Groenvynck et al. (2021) found that older people and family caregivers need information, communication, support, time and a partnership with healthcare professionals involved throughout the transition process from home to a nursing home. However, when comparing those needs to existing transition interventions, services addressing these needs are not well represented (L. Groenvynck et al., 2022). Considering these needs throughout the transition process can positively influence the ‘feeling at home’ once the older person resides in a nursing home (Brownie et al., 2014; Eika et al., 2014; Graneheim et al., 2014; Koppitz et al., 2017). Additionally, the needs, wishes and expectations concerning a move to a nursing home are very personal. This implies that older people’s expectations can influence their initial adaption and long-term experiences with those nursing homes (Cooney, 2012; Sion et al., 2019; van Hoof et al., 2015). Despite the upcoming research in this area, research capturing the perspectives of older people living with dementia is still scarce (Ciofi et al., 2022; Davison et al., 2019). Older people living with dementia are often excluded from data collection due to ethical reasons (Dewing, 2008). In spite of the indications that older people living with dementia are still able to share their perspectives and wishes on care provision (Heggestad et al., 2013; Robinson, 2002).

This study focuses on identifying how older people living with dementia perceive a potential move to a nursing home and how they wish to receive care in the future while residing in a nursing home. The main research question is: ‘What are the perspectives of community-dwelling older people living with dementia regarding a possible move to a nursing home and what are their wishes for future care if they would move to a nursing home?’

Materials and methods

Study design

A phenomenological research methodology was used (Friesen et al., 2012). The design focused on understanding the perspectives of participants and interpreting the meaning (Guillen & Elida, 2019; Shinebourne & Smith, 2009, 2010). The phenomenon under study was the perspectives of older people regarding current and future care provision. By analyzing these perspectives, the researchers aimed to understand the anticipated care wishes if older people would move to a nursing home. Data was collected through in-depth interviews conducted within Desired Dementia Care Towards End of Life (DEDICATED) project (Bolt et al., 2020). The ‘Standards for Reporting Qualitative Research’ (SRQR) checklist was used to report this study (O’Brien et al., 2014).

Participants and setting

A purposive, criterion-based sampling technique was used to recruit participants living in the south of the Netherlands. In the Netherlands, both home care and nursing home care are funded by health insurance/the government. The care receiver only needs to pay a small contribution based on their financial situation. However, the government focuses on letting older people remain at home for as long as possible. Therefore, older people should require 24-h care and supervision before they are allowed to move to a nursing home. The decision to move to a nursing home is, therefore, mostly dependent on the health status of the person rather than financial considerations (Alders & Schut, 2019). Different healthcare professionals (e.g. case managers for dementia care, community care nurses and a geriatrician) recruited the participants they cared for. The healthcare professionals made a clinical judgement regarding the cognitive abilities of the potential participants. This assessment was based on their expertise as healthcare professionals and their direct knowledge of the older person. The researcher did not use a scale to assess cognitive abilities as these scales often do not accurately reflect the communicative skills of older people. The healthcare professionals selected participants based on a set of eligibility criteria set up by the researchers. Participants were eligible if: (1) they were 65 years or older and still lived at home, (2) they had a formal dementia diagnosis and were aware of their illness, and (3) they were able and willing to participate. Potential participants received information regarding the study and were asked if they were interested to participate. Twenty-two older people living with dementia were approached. Those interested in participating gave their consent to being contacted by one of the researchers. A week later, the researcher contacted the participants by phone and provided them with the opportunity to ask additional questions. Finally, an interview date was scheduled.

Ethical considerations

All participants were informed about the study and were asked to give consent. Those who were capable to sign gave written informed consent. For those who could not give written consent, a legal representative signed the informed consent. In addition, all participants gave verbal assent to participate in the study (Black et al., 2010). The researcher clarified that the participants could stop the interview at any time and they could decline to answer certain questions without the need for an explanation. The participants were allowed to invite their family members or legal guardian to support them through the interview. The Research Ethics Committee of Zuyderland and Zuyd University of Applied Sciences (METCZ20180085) approved the study.

Data collection

The topic guide of the interviews within the DEDICATED project, addressed the following topics: (1) transitional care for a possible move to a nursing home, (2) receiving care from others, (3) interprofessional collaboration, and (4) future and end-of-life care [see appendix file 1]. To optimize the topic guide, healthcare professionals (e.g. case managers for dementia care) and family caregivers of people living with dementia were consulted and relevant literature was searched (Bolt et al., 2019; Bolt et al., 2020). Additionally, a pilot interview was conducted after which the topic guide was finalized. The focus of the current study is on transitional care. Examples of questions related to the transitional care process included: ‘If in the future you had to reside elsewhere, where would you like to live?’, and ‘What would you need in a nursing home to feel ‘at home?’ However, the other three topics were also analyzed as the literature showed that older people find it difficult to talk about care transitions (Tse, 2007). Therefore, their experiences with current care and their perspectives on future care could provide insight into what older persons’ care wishes could be if they would move to a nursing home. Moreover, it could help them to consider and discuss transitional care. Examples of questions regarding current and future care were: ‘What do you find important when offered care?’ and ‘If you needed more care in the future, what would be important?’.

Demographic characteristics (e.g. age and gender) were gathered before the start of the interviews. The interviews were conducted between August 2018 and October 2019. The interviews took place at the participants’ homes. Three researchers (CK, SB and LG) conducted the interviews, of whom two researchers (CK and SB) were trained and had experience with qualitative research and interviewing older people living with dementia. One researcher (LG) was an expert on the subject of transitional care from home to a nursing home. An observer (LD, CK, SB or LG), present at each interview, took notes and asked clarifying questions. The interviews were audio-recorded.

Data analysis

To increase dependability, two researchers (LG and AB) undertook the data analysis. This process started with transcribing the interviews according to the verbatim methodology (Polit & Beck, 2008). Excel was used to analyze participant characteristics. The researchers followed 7 iterative steps of the interpretative phenomenological analysis approach (IPA): (1) coding the data, (2) developing themes, (3) searching for meaning, (4-5) organizing and structuring the data, (6) auditing the findings with the research team and (7) narrating of the findings (Larkin & Thompson, 2011). In the first step, both researchers (LG and AB) read the data thoroughly and separately. Line-by-line, codes were added that summarized the fragments relevant to the subject of transitional care and (future) nursing home care. Examples of codes found were ‘remaining independent gives satisfaction’ and, ‘the older person wants to visit his/her future nursing home beforehand’. In the second step, the researchers (LG and AB) evaluated the different codes until a consensus was reached. Together, they analyzed the commonalities and differences between the codes until overarching themes were formed. Examples of themes that were found were ‘transition-related experiences and perspectives’ and ‘older persons’ view on the future’. In the third step, the authors started analyzing the themes more in-depth. They suspected that the current care experiences and perspectives of the older persons at home might be linked to their potential, future care wishes. Therefore, in the fourth and fifth steps, the lead author analyzed the identified themes to further define and support this hypothesis. Through analysis and interpretation with the research team, overarching themes were formed that described the assumed link between the current care experiences and potential, future care wishes. The sixth step existed of an audit. The audit existed of multiple peer debriefings throughout all steps of the analysis with the research team (HV, BdB, TvA, JPH, JM, CK and, EvR). Any disagreements were resolved and a consensus was reached through joint discussion (Janesick, 2007). Finally (step 7), the results of the analysis were written down, narrating and defining each of the overarching themes identified in this study. Participants’ quotes were added throughout the paper to recite the perspectives and experiences of the participants (Larkin & Thompson, 2011). By analyzing the data separately and discussing mismatches in coding, investigator triangulation was applied (Polit & Beck, 2017).

Results

Eighteen older people living with dementia participated in the study. Table 1 shows the participant characteristics. Four participants declined to participate. Of those four, one person living with dementia and one family caregiver declined participation. The two other participants cancelled last minute. It was unclear whether the cancellation was initiated by the person living with dementia, the family caregiver, or both. The majority of the participants (n = 13) had a relative that accompanied them during the interview. The family members did not participate in the interview. The interviews lasted 53 min on average, with a range of 31–108 min. One person resided at home during recruitment but moved to a nursing home when the interview took place. The participant was included in the study as he was still able to provide insight into his experiences with care and his perspective on moving to a nursing home. Two people lived in an assisted living facility. However, in the Nederlands, an assisted living facility is considered living at home as the care is provided by home care organisations. Finally, saturation was reached as the final interviews merely confirmed the existing codes (Saunders et al., 2018).

Table 1. Participant characteristics.

Age, mean (range)	82 (77–93)
Gender, number (%)
Male	11 (61%)
Female	7 (39%)
The current living situation of the participant, number (%)
At home	15 (83%)
In an assisted living facility	2 (11%)
In a nursing home	1 (6%)

The results were divided into two parts: (1) Future life in a nursing home: an idea that was feared by the majority of community-dwelling older people, and (2) The care wishes of potential, future nursing home residents were focused on individuality, autonomy and contact with others. The three wishes are described by the subthemes of (a) Individuality: the wish for personalized care while continuing routines and hobbies (b) Autonomy: the wish for respect regarding preferences and choices while enabling independence, and (c) Social contacts: the wish to no longer be alone while remaining close to friends and family.

Future life in a nursing home: an idea that was feared by the majority of community-dwelling older persons

The results showed that the majority of the participants focused on remaining at home for as long as possible and feared the idea of moving into a nursing home. Several participants specifically stated that they did not want to move. Two of these participants said that thinking about that possible scenario frightened them. Negative associations with nursing homes, expressed by most participants, could be related to feelings of anxiety and fear. More specifically, a few participants recalled negative experiences with family/friends residing in a nursing home.

[Quote D17, Living at home: ‘Well, like, I found that some people, it is sad when they are sitting there. They don’t look happy.’]

Several older people associated nursing homes with loss. They linked moving to a nursing home with declining health or serious life events (e.g. breaking a hip). One person was scared of losing her dearest possessions due to the limited space a nursing home room has, while another person was scared of losing her hobbies. One person was scared of losing his identity and becoming one of many.

[Quote D1, Living at home: ‘Yeah, that you lose yourself. You just sit together with a group of people who have the same illness and are surrounded by the same nurses.’]

Despite the ever-returning wish of wanting to remain at home, a great number of the participants stated that a further decline in their health, resulting from their illness, could lead to a nursing home move. Two persons said that they would be open to residing in a nursing home. It would allow them to stop fighting a losing battle against dependency and they would be able to rely on others for help. The interviews revealed that older people considered moving to decrease the burden experienced by their family members/friends. Conversely, some older people did not have negative experiences with nursing homes. They described the beautiful environment in which the nursing home was built or the good/friendly staff that provided the necessary care.

[Quote D15, Living at home: ‘Most exasperating? It is not exasperating for me. I think it is a good institution. Why? People in need of care receive the necessary care.’]

The participant who had already moved to a nursing home and the two participants who moved to an assisted living facility indicated being relieved and referred to the long-term care facility as ‘their home’. The participants’ choice to move was mostly a combination of being alone, a loss of independence and having a home that no longer fitted their needs. The person who had recently moved to a nursing home liked his new home, where he had company. In his own house, he felt unsafe and locked up, unable to go out. He described the nursing home as his new home where he could participate in various activities and continue his habits of drinking a glass of wine and enjoying his afternoon siesta.

[Quote D13, Living at a care facility: ‘Agreed, agreed, yes, I could no longer live there alone… I find it much better here.’]

The care wishes of potential, future nursing home residents are focused on individuality, autonomy and contact with others

In general, older people living with dementia were able to express their care wishes. The analysis of their stories about the present, past and future identified that the potential, future nursing home residents wished for care that enables them to remain (a) individuals; (b)who were autonomous; and (c) in contact with others.

Individuality: the wish for personalized care while continuing routines and hobbies

All interviews led to the older people talking about their past lives and who they were as individuals. The participants stated the importance of keeping their individuality and continuing life regardless of their diagnosis, level of care, or place of residence.

More specifically, the participants felt it was important that healthcare professionals provided personalized care. They defined the latter as having time for an informal chat and listening to their stories.

[Quote D18, An assisted living facility: ‘They are really, very nice. It is as if… he is my son, we talk about the weather, the kids…’]

The results showed that when older people felt comfortable enough to talk about a possible move to a nursing home, they expressed the importance of having an environment and living space where they could continue their routines and hobbies. Several participants specifically mentioned that their future nursing home should facilitate the continuation of their previous hobbies and routines.

[Quote D19, Living at home: ‘Music is my passion. So if you could have similar opportunities in the nursing home that would be ideal, yes.’]

The wish to continue previous hobbies and routines, once residing in a nursing home, could possibly be explained by the fact that the majority of participants stated that they were happy with the life they were currently living. The majority of participants told the interviewers that they had a fixed routine consisting of visiting friends and practising hobbies or religion. They wanted to remain active and fill in the free time they had with enjoying life. Many of the participants had hobbies. The most common hobbies were walking and going out. Three people specifically mentioned the importance of staying up to date with global news. Religious participants also actively practised their beliefs (e.g. they went to church or prayed).

[Quote D20, Living at home: ‘If I sit inside or if it rains or something, it is not right. Normally, I am always outside. Alternatively, I go for a walk or I take my bike if I have nothing to do. I cannot sit inside.’]

Autonomy: the wish for respect regarding preferences and choices while enabling independence

To maintain their individuality, almost all older people stressed the importance of autonomy, in all phases of life. The analysis showed that this wish for autonomy determined older people’s preferences concerning their future housing. Older people felt the idea of moving into an assisted living facility less threatening compared to the idea of moving into a nursing home. An assisted living facility would allow them to remain more autonomous.

[Quote D7:’With an assisted living facility, you cannot get it much better, right? Living autonomously and knowing that…’ Interviewer: ‘You can still receive the necessary care?’ Participant: ‘Yes, that is amazing. I am very pleased.’ ]

Once in the LTC facility, the older people felt it was important that they could participate in activities of their choice. Negative feelings were expressed when a fixed routine had to be followed. The participants expressed the wish for autonomy regardless of their place of residence or declining health status.

[Quote D1, Living at home: ‘It was just that management arranged everything. That is when I think: I cannot feel at home like this.’]

The majority of the older people stated being aware of the implications that a declining health status would have on who they were and what they were able to do. The possibility of having to receive care from family/friends was one of the concerns expressed by some older people, as they felt it impeded their independence. Moreover, a few participants associated receiving care with losing their dignity and feeling exposed. They felt submitted to care and associated it with losing their privacy.

[Quote D17; Living at home: ‘You do not have anything anymore. You are naked. In the end, you don’t know, you do it and you say come. However, your self-esteem disappears.’]

Participants coped with a declining health status differently. Despite all the different coping strategies, the participants stressed the importance of being a part of life. They changed their plans in a way that allowed them to participate in activities of daily living independently and making their own decisions. More specifically, some older people had friends they saw regularly and when their disease made them unable to visit, changes would be made to accommodate the older people’s wish to meet his/her friends. Another participant followed a church service on television when she could no longer attend in person.

[Quote D1, Living at home: Interviewer: ‘And the garden right?’ Participant: ‘Yes, I can still do that and that is nice. Because then you got something to do and you feel of value.’]

The healthcare professionals’ encouragement of autonomy during care, currently provided to participants, influenced the older people’s perspectives on receiving care in the future (e.g. at a nursing home). More specifically, the older people stated they did not want any help if it was not strictly necessary. They perceived receiving (unnecessary) help, given by healthcare professionals, as negative or difficult. Moreover, almost all participants stated the importance of respect for their wishes, preferences and choices in life and care. When it came to care provision, several older people defined respect for their wishes/preferences as respecting their autonomy, for instance, enabling them to participate in open and honest conversations, being listened to and being taken seriously.

[Quote D14, Living at home: ‘To start they have to speak with you on the same level. That is something I appreciate.’]

When these wishes, preferences, and choices were ignored, older people felt unheard by healthcare professionals. An example hereof is how two participants felt they had to prove their independence.

[Quote D22; Living at home: ‘How do you have to prove to someone that you took a shower? … If that person does not believe you while you have been showering for 80 years. That is very difficult.’]

Although some negative emotions were expressed concerning care provision, the results showed that some of the participants’ negative experiences could also be associated with a sense of loss resulting from their disease. An example was how two older people linked their negative feelings towards care provision to being dependent on that care.

[Quote D4, Living at home: Participant: ‘I did not like the different healthcare professionals.’ Interviewer: ‘Why?’ Participant: ‘If it is easy to answer their questions then it is not a problem. However, when it gets harder then it is not so nice.’ Interviewer: ‘They asked you difficult questions?’ Participant: ‘Yes, beyond my capabilities.’]

Social contacts: the wish to no longer be alone while remaining close to friends and family

Throughout the interviews, it became clear that for the participants, social contact remained pivotal despite their diagnosis. This could also be reflected in their needs and wishes regarding possible, future nursing home care. The older people who had already moved or were planning to move lived alone. They all indicated that one of the reasons for the (future) move was to avoid being alone. Moreover, older people’s preferences regarding the location of the nursing home were based on their wish for social contact. They defined a nice environment/living space as having a nice view and being in a familiar neighbourhood and being able to go outside while having sufficient space inside (e.g. to invite family), allowing them to remain connected. A clear example is how one older person, who moved to a nursing home after recruitment, no longer feels lonely now that he resides in a nursing home.

[Quote D13, Living at a care facility: ‘Good, definitely good. Because where I lived previously, I was alone the whole day.’]

The results revealed that the wish for social contact is also reflected in the important role of (future) nursing home staff. Several older people stressed the importance of having friendly, loving staff available to offer a helping hand. Other older people expressed the importance of connecting with other residents and making friends.

[Quote D19, Living at home: ‘I already spoke about having good contact. You need to have competent staff, also concerning personal contact with patients and not just technical aspects.’]

The importance of social contact was reflected in the older people’s definition of good (future) care. Most participants related good care based on the interaction and contact they had with healthcare professionals that care for them at home (e.g. home care nurses, the general practitioner) next to adequate care provision. Good care was defined as having satisfactory contact with the healthcare professionals and perceiving them as being friendly, trustworthy, hardworking and available. They stated the importance of having a ‘click’ with the healthcare professional. Consequently, negative care experiences could be related to impersonal care.

[Quote D23, Living at home: ‘We make it very gregarious; I always have coffee for when they come… Yes, it has come to a point that they walk towards the kitchen and turn on the water… That is nice, is it not?’]

Consequently, negative care experiences could be related to impersonal care. More concretely, due to the complexity of their illness and the schedules of healthcare professionals, different healthcare professionals cared for the same older person. For one person this was too hectic. For others, it took some time to get used to the different healthcare professionals. One older person was, after an adjustment period, grateful for the diversity of people visiting her. It allowed her to interact with different personalities.

[Quote D22, Living at home: ‘You come across very feisty people, but also very wise people. The next day a more upbeat person can walk in, which is nice.’]

Finally, the results indicated that older people enjoyed spending time with friends and family. According to the older people, friends and family provided them with good company, humorous conversations, and memories of the past. The participants who mentioned the importance of friends and family were happy when they came for a visit. The older people indicated that family gave them meaning in life.

[Quote D17, Living at home: ‘My family does. I do not care where I live as long as my daughter and the kids are surrounding me.’]

Discussion

This study aimed to identify how older people living with dementia perceive future life in a nursing home and what their future care wishes could be if they would ever move to a nursing home. The majority of older people living with dementia feared the idea of having to move. Nevertheless, they were able to express their needs and wishes concerning a potential move to a nursing home. They had a clear view of how they perceived current care and what made their life meaningful. If they were to move to a nursing home, they wanted to be perceived as autonomous individuals who remain in contact with others.

Regarding older people’s fear of a possible move to a nursing home and their preference to remain at home, Tse et al. (2007) found similar results. Only 15% of their sample of 118 older people would consider moving to a nursing home. A possible explanation could be the negative feelings (e.g. feelings of loss) that are often associated with a move to a nursing home (Brownie et al., 2014; Cater et al., 2022). For example, older people feared that they will lose their autonomy and control when moving into a nursing home (Brownie et al., 2014). These fears might be reasonable, as a qualitative study by Walker et al. (2016) indicated that nursing home residents felt they traded their autonomy and individuality, in exchange for a safe environment and assistance from healthcare professionals. Moreover, studies found that healthcare professionals rarely engaged their residents in activities of daily life (e.g. cooking meals) (de Boer et al., 2021; den Ouden et al., 2015). This suggests that some nursing homes are not able to tailor care to older people’s needs and wishes.

Our findings suggested that older people living with dementia have the same wishes and needs concerning their future care as older people without cognitive decline. More specifically, a good number of studies focused on defining the meaning of ‘home’ in a nursing home from the perspective of older people without cognitive decline. Similar to this study, those studies found that older people felt at home in a nursing home when they experienced autonomy, which allowed them to feel in control and make choices. Additionally, they stated the importance of involvement and engagement with other residents and staff and the importance of personalization (Cater et al., 2022; Johnson & Bibbo, 2014; Rijnaard et al., 2016; van Hoof et al., 2016; van Hoof et al., 2015; Wada et al., 2020).

The older people living with dementia in our study identified three anticipated care wishes. These wishes were similar to those reported in the study by Rijnaard et al. (2016) who found that 15 factors, divided into three overarching themes, influenced the sense of home for older people residing in a nursing home. Two of the three themes, psychological (e.g. autonomy and being acknowledged as an individual) and social factors were directly in line with the results of this study. Additionally, previous studies identifying the meaning of home for older people in the community found similar care needs (Cater et al., 2022; Cooney, 2012; de Boer et al., 2020; Falk et al., 2013; van Hoof et al., 2016; van Hoof et al., 2015). This suggests that older people’s anticipated care needs, if they were to move into a nursing home, are similar to the needs of older people residing in the community (Eijkelenboom et al., 2017; Felix et al., 2015; Groger, 1995; Oswald & Wahl, 2005). This could confirm the earlier assumption that led to the data-analysis process.

The participants who positively considered or experienced the move to a long-term care facility in our study felt that they could no longer live an individualistic, autonomous and social life in the community. This suggests that older people might accept a nursing home move more easily when their needs for individuality, autonomy or social contact could be met in nursing homes. This insight is crucial, as research showed that older people’s involvement in the decision-making process regarding a care transition is pivotal to nursing home adjustment (Brownie et al., 2014).

Practice, policy and research implications

Both the methodology used to collect the data and the results of this study have important implications for policy and practice. First, collecting data on/or listening to wishes and needs in the life history when performing home-based care visits, could be a way of identifying a suitable time to suggest a move to a nursing home. By focusing on older people’s past life and current care provision, this study was able to create a deeper understanding of older people’s perspectives of potential, future nursing home care. This is paramount as similar questions could help healthcare professionals to involve older people living with dementia actively in their transitional care process (Brownie et al., 2014). However, simply having information about a person’s life history, hobbies and preferences does not always lead to a comprehensive transitional care process. Future research should focus on identifying additional contextual factors that can improve the transition from home to a nursing home.

Thirdy, this paper also confirms results from previous studies that signalled the influence of the transitional care process on older people feeling ‘at home’ in a nursing home (Brownie et al., 2014; Graneheim et al., 2014; O’Neill et al., 2022). More specifically, this paper showed that having significant information on an older person’s life, hobbies, habits and social contacts can contribute to helping an older person adjust to living in a nursing home. Therefore, it could be important for healthcare professionals to prepare for this transition process together with the older person by organizing nursing home visits, assembling information about past life experiences and current hobbies/routines at home and helping the older person become acquainted with the healthcare professionals and residents of the nursing home (Groenvynck et al., 2021). The latter might be crucial as older people’s relationships with other residents, staff and family also influenced their nursing home experiences (Cater et al., 2022; de Boer et al., 2020; Molony et al., 2011; Rijnaard et al., 2016; van Hoof et al., 2016; van Hoof et al., 2015). Therefore, in both in-home care and nursing home care, policymakers and management could educate their staff on providing relationship-centred care (de Boer et al., 2020; Malloch et al., 2000). Relationship-centred care is a framework to aid the conceptualization of the health care system. Central within this framework are the quality and nature of the relationships. More specifically, it focuses on the relationship between the patient and the healthcare professional while taking into account the community surrounding them (Beach et al., 2006). Following the results, policymakers and management should employ innovations and strategies that would allow the older person to stay autonomous and in contact with others while remaining unique. Such strategies should be employed at the start of the transition process, as research found that a timely initiated transition process positively affects older people’s outcomes and adjustment when moving to a nursing home (Afram et al., 2015; Davies, 2005; Johnson et al., 2010; Ryan & Moore, 2023).

Next to implementing relationship-centred care practices on time, healthcare professionals need to facilitate residents’ ability to remain autonomous when making decisions about care provision and activities of daily life if they would ever move to a nursing home. It requires healthcare professionals to be flexible and provide tailored care. More specifically, they should adjust their care according to the older people’s hobbies and routines in such a way that older people can continue their life autonomously once they reside in a nursing home. This care may vary between residents, and over time (e.g. If a resident wants to participate in a certain activity, it does not mean he/she would like to participate again a week later). Furthermore, staff needs to be able to get a clear view of a resident’s social network, and should be able to facilitate maintaining this social network when an older person moves to a nursing home.

Finally, future research should focus on confirming the outcomes of this study by prospectively following older people living with dementia during the transition from their home to a nursing home, thus facilitating a comprehensive overview of the transitional care process. This is crucial as existing research only focused on the perspectives of older people before or after the move to a nursing home.

Limitations

Firstly, the data collection was performed by researchers from the DEDICATED project, a study on palliative care for older people living with dementia. Therefore, not all questions focused on transitional care and future nursing home living. However, the additional questions on older people’s daily lives and current care provision enriched the results of this study. Secondly, one older person was interviewed while residing in a nursing home. This was because the older person had moved to a nursing home after recruitment. The researchers felt that his experiences added to the understanding and enriched the results. Nevertheless, the older person’s living situation was taken into account when analyzing and reporting the results of this study. Moreover, sufficient amounts of interviews were conducted for saturation to be reached. Finally, it were the healthcare professionals, who cared for the older persons, that recruited them for the study. They judged their willingness and ability to participate based on their knowledge of the potential participants. It could bias the results of this paper as the older people who were not considered willing or able to participate may have different perspectives. However, the results of this paper are in line with previous studies which suggests that this recruitment method has not affected the results.

Conclusion

Older people living with dementia preferred to live at home for as long as possible and they feared the idea of having to move to a nursing home. Nevertheless, the questions asked throughout the interviews allowed older people to express their perspectives regarding potential, future care wishes. The results of this study suggest that older people want to be seen as individuals, who are autonomous and remain in contact with others. The study showed that information on past and current care experiences can educate and inform healthcare professionals on the importance of incorporating these care wishes when involving older people in the transitional care process. Simultaneously, discussing these wishes could help to identify ‘a suitable time’ for a transition from home to a nursing home.

Authors’ contributions

The research team have made substantial contributions to the conception and design of the work. All authors approved the submitted version.

Ethics approval and consent to participate

The Medical Ethical Committee of Zuyderland and Zuyd University of Applied Sciences, Heerlen (METCZ20180085) approved the study.

Abbreviations
DEDICATED project	=	Desired Dementia Care Towards End of Life project

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the TRANS-SENIOR project. It has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement [Grant number No. 812656].